Becoming a patient advocate in inflammatory bowel disease (IBD) was never part of my plan. When I was diagnosed with IBD, I imagined that I would get the right treatment, achieve sustained remission, and get back to living a long, happy life.
Unfortunately, life quickly taught me that chronic illness doesn’t always work that way. Some of us may get lucky. But for others, fighting for your health, and fighting for a better future, becomes a new and hard way of life.
There were different moments that pushed me toward advocacy, including around the time of my surgery when one of the surgeons told me: “You will have to live with this disease.” Those words lit a fire in me that has never gone out. I couldn’t accept suffering as the status quo and became determined to help create change.
And so, a new journey began.
From that moment on, I immersed myself in patient advocacy, pushing for better treatments and better care. For me, that means supporting novel research approaches that could bring medications with new mechanisms of action to patients. It also means connecting with nonprofit organizations, clinicians, researchers, and patients to work together to improve care. Another priority is advocating for greater awareness of underutilized clinical interventions, such as evidence-based nutrition alongside medication, better recognition of bile acid malabsorption, and more progress in perianal Crohn’s disease research. These have become some of my major priorities.
But advocacy isn’t for the faint of heart. It is rarely easy to convince others to embrace a new vision, invest in it, or turn it into reality.
Six years into this journey, I’ve learned that advocacy is about consistent action and not giving up. It’s about asking difficult questions, supporting better science, amplifying patient voices, showing up, building connections, and turning frustration into action. Also results, not just talk.
We’ve collectively come a long way, but there is still much more we need to achieve. The rising prevalence of IBD, and the fact that current treatments are still not working for everyone, is concerning.The path from a promising idea to a new medication is also long and complex, which makes continued research, collaboration, and investment so important.
If you’re interested in advocacy yourself, or simply want to read more and learn about the topic, below are some lessons you may find helpful.
6 Key Lessons I’ve Learned Along the Way
1. Seize advocacy opportunities
Be on the lookout for opportunities. Sign up with patient and charity organizations. Participate in research. If you meet skilled and passionate people along the way, stay in touch with them. You never know when you might collaborate on a project or initiate something new.
Some of the best opportunities come unexpectedly. Once, I filled out a patient survey and was subsequently invited as a patient representative to participate in workshops to identify important research priorities. I never imagined I would get this chance.
Also don’t wait for the perfect moment. Sometimes opportunities come to us and sometimes we must create them ourselves. If you have a good idea for advocacy or a topic you’re passionate about, reach out to clinicians and start the conversation. This is how I have developed resources to help address unmet needs in areas such as pediatric IBD and bile acid malabsorption. What started as a simple idea grew into something that could hopefully provide information, support, and a voice where it was needed.
2. The power of the patient voice
Sometimes it may feel like it doesn’t, but your experience gives you a unique perspective that can influence researchers, clinicians, policymakers, and others working in healthcare. Sharing your story simply helps people see the human side of the condition. Decisions are also being made about the future of IBD care and research, which is why your input matters. Your experiences, perspectives, and priorities can help shape what that future looks like.
Not every patient experience is the same. That’s important. Nuanced perspectives, different experiences, and even differing views can help create a more complete understanding of IBD and the challenges patients face.
Doctors see many patients with IBD every day. If you have something valuable to contribute, don’t shy away from sharing it. And don’t let the occasional naysayer discourage you. They are fewer than you might think. Every story about why IBD is an urgent issue and why we need better treatments can help build momentum for the next breakthrough.
3. Back advocacy with evidence and research
If we want to change how IBD is understood and treated, passion alone isn’t enough. We need science. Supporting new research and engaging with emerging evidence are crucial to moving the field forward. Nonprofit organizations can play an important role as a bridge between researchers and the wider IBD community, helping make promising research more visible and supporting it through fundraising and donations.
You may sometimes wonder whether making a donation really makes a difference, and I understand that feeling. For decades, progress can seem painfully slow. Medical research is complex, time-consuming, and expensive. But every contribution can help keep the research pipeline moving toward the discoveries and treatments that patients desperately need. Therefore, I wholeheartedly support Propel a Cure for Crohn’s Disease, a nonprofit funding transformative research into the underlying causes of Crohn’s disease, with the aim of resulting in better treatments and laying the groundwork for cures. Learn more about funded novel research projects here.
There are incredible researchers out there identifying new mechanisms and exploring novel approaches. Supporting this work will remain a critical part of creating a better future. We can talk about change as much as we want, but without investing in new research, we won’t move much further.
4. Be ready to stand alone
Sometimes you will find yourself in a room as the lone voice advocating for something you believe is important. Not everyone will share your priorities. I remember participating in a research focus group where nutrition in IBD was pushed aside while almost every other topic imaginable was prioritized. By staying calm, objective, and persistent in my reasoning, I was able to make my point more effectively.
There is always someone in the room listening, like a gastroenterologist or a researcher. Even when you don’t see the impact of your advocacy immediately, you are planting a seed.
Looking back, there are many moments when I regret not speaking up, both online and offline. Tougher conversations are necessary sometimes to get innovative approaches off the ground, like in other chronic diseases communities is happening. At the same time, I’ve learned that speaking up doesn’t always mean engaging in an argument. Sometimes, choosing a different approach, finding the right person to talk to, or simply waiting for the right moment can be much more effective.
The goal isn’t to win an argument. It’s to help create change and sometimes there is more than one way to get there.
5. Collaborate with IBD nonprofit organizations
Big changes rarely happen in isolation. Your support, perspective, and skills can make a much greater difference than you might think when amplified through established platforms. Nonprofit organizations can have limited resources, but behind the work are people who make research, support, education, and information possible and who have helped move IBD care forward. You can become one of them.
Do you have a business, a strong network, expertise, fundraising experience, or connections to philanthropic investors? Get in touch.
Support also doesn’t always have to mean making a large financial contribution. Sharing a website, spreading information on social media, or simply helping to connect the right people can also make a difference.
6. Stay in the fight and find your tribe
Last but not least, find your people. Real change takes time. Advocacy is critical and can be rewarding when progress is made, but it also can be frustrating, lonely, and slow. Social media is also not the whole picture of what is happening within the IBD community. Over the years, I’ve learned that meaningful advocacy is built on relationships, collaboration, and people who are willing to keep showing up.
As we look ahead, we should keep raising the bar for what new treatments can achieve and remain ambitious about the difference they can make in patients’ lives. By sticking together, speaking up, and refusing to accept “just living with it” as the final answer, we can help move the needle and shape a better future for people living with chronic illness.
Thank you for reading. You can follow more of my advocacy work on social media here.